Improving end of life care in chronic obstructive pulmonary disease (COPD): testing the case for change
NHSCANCER NHS Improvement LungDIAGNOSTICSHEARTLUNGSTROKENHS Improvement - Lung: NationalImprovement ProjectsImproving end of life care inchronic obstructive pulmonarydisease (COPD): testing thecase for change
Contents 3NHS Improvement - Lung National Improvement Projects -Improving end of life care in chronic obstructive pulmonarydisease (COPD): testing the case for changeContentsIntroduction 4Key Learning 6Section 1-3: Case studies 9One - Breathing Space, Rotherham 13Two - Solihull Community NHS Care Trust 15Three - Hartlepool Primary Care NHS Trust 17Acknowledgments 18References
4 IntroductionIntroductionNational position and workstream The projects in the NHS Improvement -context Lung End of Life Care workstream are a Advance Care Planning – Giving major step towards achieving these aims. people the opportunity to discussAround half a million people die They represent a wide variety of clinical their wishes around issues such asevery year in England. The end of life is staff who are focused on addressing the resuscitation and representation oninevitably something everyone must face, key issues of: prognostic indication, loss of capacity is important andbut it is perhaps the most difficult and Advance Care Planning and palliative should be undertaken when thesensitive issue within society today. Even care registers. patient is as well as possible.for healthcare professionals it is widelyacknowledged that it can represent one The following sections in this document There is a plethora of publishedof the most challenging clinical areas in describe each of the NHS Improvement - patient information available towhich to specialise. Lung sites, aims, objectives and details clinical staff to aid them in their the learning and progress that has discussions with patients but staffIn 2008, the Department of Health emerged. confidence around advancedpublished the End of Life Care Strategy communication skills was very low.in response to the significant variation in Summary of site projects There is a considerable variationservice provision across the country. It between the training which cancerhighlighted the need for the NHS and There were three End of Life clinicians receive and which issocial care services to provide holistic, improvement projects running in the available for staff managing patientshigh-quality care for all adults at the end following organisations: with a long-term condition.of life, and their families and carers, andadvocated the value of supported care • Solihull Community NHS Care Trust Raising awareness – The issue ofpathways to help make this a reality. Care (West Midlands) death and dying is a sensitive topicpathways have been successfully • Hartlepool Primary Care NHS Trust but lack of awareness amongstdeveloped for a number of potentially (North East) patients and more surprisinglyterminal illnesses, such as dementia, heart • Breathing Space, Rotherham Primary amongst staff about the potentiallydisease and stroke, and should now be Care NHS Trust (Yorkshire and the life threatening nature of theevolved for chronic obstructive pulmonary Humber). condition impacts on the care COPDdisease (COPD) which accounts for patients receive in the final stages ofaround 23,000 deaths a year. life. Summary of key learningCurrently, less than 50% of clinical The tendency to continue withservices for COPD in the NHS have a The key learning (see next section proactive management of symptomsformal arrangement for users of these for more details) is centred on the and maintain a positive prognosisservices to gain access to specialist end of following themes: means seriously ill patients are at risklife care. In order to meet this challenge, of not being able to plan ahead atclinical staff must ensure that COPD is Prognostic indicators – Sites were the right time with fullrecognised as a cause of death amongst testing two different indicators; the understanding of their condition.patients. It is also vital to give people the Gold Standards Frameworkopportunity, and to help them to plan for Indicators and the BOD (Body Mass End of life registers – Currently,their future care. In conjunction with this, Index, Obstruction, Dyspnoea score) palliative care Quality Outcomescommissioners and providers should which is an abbreviated form of the Framework (QOF) registers areensure access to end of life care services, BODE index (Body Mass Index, utilised in GP practices to identifyin line with care provided to those with Obstruction, Dyspnoea and Exercise those people approaching the end ofother life threatening illnesses such as – Celli et al, 2004). Evidence life, thereby helping ensure that theircancer. suggests there was variability in the needs are met. However, they are reliability and validity of using generally incomplete and biased indicators to accurately predict the towards the care of those with last six to 12 months of life. cancer.
Introduction 5 together across boundaries to spot the Finally, it is hoped that this work will The Department of Health End of opportunities and manage the change. provide an enhanced recognition of Life Care Strategy (2008) advocated And third, to act now, for the long term. COPD across the medical community as a the development of ‘End of Life Care serious and invariably life-threatening Locality Registers’ as a means to The ambition is to achieve efficiency disease to ensure healthcare professionals support the provision of high quality savings of up to £20 billion for start having discussions with people coordinated care and to address the reinvestment over the next four years. about their wishes at end of life. This will shortcomings in the current practice This represents a very significant ensure patients receive care appropriate registers. The locality registers are challenge to be delivered through the to their specific needs. electronic records containing detailed work the NHS has already important details about care undertaken on Quality, Innovation provision and the preferences of Productivity and Prevention (QIPP) and the patients identified as being at the additional opportunities presented in the end of life. This information can be Equity and Excellence: Liberating the then easily accessed by all healthcare NHS. professionals that the patient comes into contact with. Key to the Many of the measures outlined in this effective implementation of a locality document are designed to support the register is ensuring effective NHS to meet the QIPP challenge, either mechanisms are in place to identify by identifying where resources might be all patients approaching the end of released or by improving understanding Hannah Wall life, whether this be a GP, a member of the key interventions that have National Improvement Lead, of the community team, or other greatest effect. NHS Improvement – Lung health and social care professional, and ensuring that effective Considerations for future working education and training is in place for all the relevant professionals around All the projects within this work stream identification, communication and have been building the evidence for the advance care planning. An creation of a gold standard pathway for evaluation of the pilots undertaken COPD end of life patients but it is by Ipsos MORI is available at: apparent that more work is still needed. www.endoflifecareforadults.nhs.uk/ publications/localities-registers-report There is limited evidence over the validity and reliability of different types of Phil Duncan prognostic indicator and this should form Director, the basis for future work to address NHS Improvement -LungQuality, Innovation, Productivity dominance of certain indicators overand Prevention (QIPP) others and at what point in the patient trajectory they should be used.Demand for healthcare is increasing and The use of Advance Care Planning at thethere are areas where we could increase appropriate time has yielded positivethe quality, efficiency and value for feedback from patients and carersmoney of services as well as improving therefore it is hoped that adoption andoutcomes for people with COPD. Three spread throughout other parts of thethings need to be determined to make country may occur.this possible. First, improving qualitywhilst improving productivity, usinginnovation and prevention to drive andconnect them. Second, having localclinicians and managers working
6 Key learningKey learningThe end of life care pathway which Prognostic indicators There can be many such exacerbationsfeatures in the Department of Health End Central to commissioning a high quality, during the more severe stages of theof Life Strategy (2008) contains all the cost effective service is a better disease and this make prognosiscomponents of a gold standard approach understanding of the end of life phase of extremely difficult.to care and is the model against which COPD and one of the most challengingNHS organisations should aim to plan areas within this is the patient trajectory.their services. Trajectory of malignant disease In malignant diseases, such as cancer, it isEnd of life care in chronic obstructive easier to predict the rate of deterioration 100pulmonary disease (COPD) is a complex and the amount of time which theprocess but good care is essential as patient may have left to live because of 80 Function %nearly 23,000 deaths occur each year the nature of the condition and gradualfrom the disease which is approximately worsening of symptoms. 605% of all deaths. In COPD, the steady downward decline is 40 DeathThe three projects within the end of life replaced with a relatively unpredictable 20care workstream have focused on testing series of stable periods dispersed withkey elements of this pathway and to troughs. The troughs represent an acute 0examine what a pathway adapted exacerbation (attack of breathlessness) Time >specifically for patients with COPD might from which the patient may recover backbegin to look like. to a relatively good degree of health. Trajectory of COPD 100 End of Life Care Pathway (End of Life Care Strategy) 80 Function % Discussions Assessment Delivery of 60 as the end care Coordination high quality Care in the Care after of life planning of care services in last days death 40 approaches and review different of life settings Death 20 0 What could this like for COPD specific patients? Time > Prognostic Advance Care End of Life Acute/ Liverpool Support for Understandably, clinicians do not wish to Indication Planning Care GP Community Care Carers (Preferred Practice Palliative Pathway initiate end of life care until it becomes Priorities of Registers Care Teams Achievement entirely appropriate but equally want to Care, of Preferred resuscitation, Priorities of give patients realistic information on the Advance Care severity of their condition and time to Decisions) plan ahead. INFORMATION
Key learning 7There are several sets of prognostic Two workstream projects looked Advanced Care Planningindicators which are in use at present. specifically at the use of prognostic A key component of any end of life careThe most prolific is the Gold Standards indicators. Breathing Space in Rotherham service, regardless of disease, is that ofFramework indicators for COPD and assessed the Gold Standards Framework Advanced Care Planning. This is wherecurrent guidelines recommend that indicators with patients on admission and the patient is given the opportunity topatients who exhibit one or more of the those outpatients attending pulmonary document future wishes on a number offollowing symptoms may be entering the rehabilitation to determine how many areas such as:end of life stage. indicators may be present and how this may relate to time until death. Learning • Their Preferred Priorities of Care e.g.Another indicator widely used is the in the project suggested that overall at their chosen place of deathBODE index (Celli et al, 2004) which takes least three were needed to accurately • Their views on resuscitation anda score from a collection of predict when the initial discussion was treatment through the use of anmeasurements (Body Mass Index, FEV1 warranted. The findings support this as it advance decision and do not attemptobstruction, MRC dyspnoea score and was witnessed from the 83 patient resuscitation documentationexercise). Alternatively many clinicians use deaths which occurred during the project • Who they would like to appoint in theevidence based judgments to determine 18 had three or more indicators present event they loose capacity e.g. a Lastingwhen the threshold is reached. However, at the time of death. Power of Attorney.the validity of all these indicators and theevidence of their effectiveness are still in In contrast Hartlepool Primary Care NHS The use of supplementary writtenthe process of being gathered. Trust used an adaptation of BODE which information to aid clinicians when having was the ‘BOD’ score. From data analysed these discussions with patients is useful the project lead discovered that BOD may but selecting which information to use, be a predictor for the very early stages of when to use it and how much to use is a • Disease assessed to be severe decline amongst patients – perhaps those complex and sensitive area which requires e.g. (FEV1 <30% predicted – with more than the traditional six to 12 careful judgement on the part of the with caveats about quality of month timescale which normally defines clinician involved. testing) the end of life. This may be extremely • Recurrent hospital admission important learning as it may signal a The project sites found there was no (>3 admissions in 12 months phase where changing interventions are shortage of available information they for COPD exacerbations) considered and regular reviews may need were able to use or adapt. Some of the • Fulfils Long Term Oxygen to become more frequent in order to popular choices included information Therapy Criteria maintain stability in disease control and produced by: the National End of Life • MRC grade 4/5 – shortness of slow the rate of disease progression. Care Programme, the National Council breath after 100 meters on the for Palliative Care, The Whittington NHS level or confined to house Two of the sites (Solihull Community NHS Foundation Trust, St Christopher’s through breathlessness Care Trust and Breathing Space) also Hospice and the British Lung Foundation. • Signs and symptoms of right tested use of the ‘surprise’ question, Breathing Space in Rotherham were heart failure which basically asks the clinician to trialling the British Lung Foundation • Combination of other factors consider whether they would be surprised literature but have decided that ultimately e.g. anorexia, previous if the patient was still alive in 12 months they would like to produce their own ITU/NIV/resistant organism, time. Both sites felt this very simple tool literature which has information patients depression to be highly effective as a predictor of can add to depending on their needs and • >6 weeks of systemic steroids death and both advocated its accuracy as how much information they feel they for COPD in the preceding 12 on a par with or above the more formal would like. months. prognostic indicators they tested. Gold Standards Framework Prognostic Indicator Guidance
8 Key learningSome sites have found that there are The first step the project sites took was in Primary care end of life registers forpatients who do not wish to talk about determining the understanding and patients with end stage COPDdeath, dying or end of life care in relation knowledge of staff in order to audit both It is widely acknowledged that patientsto their COPD. They accept these patients the awareness and the skills of individuals with COPD should be regularly reviewedwill always exist and that the wishes of on end of life care they had in the clinical in primary care. Patients who are deemedthe individual must be respected. teams. There is some excellent to be at the end of life should be added information on undertaking skills audits to the practice end of life register (whichBreathing Space also found that a small and determining what level of could also be named ‘the palliative care’number of their patients were distressed competency and training staff need. The or ‘the Gold Standards Framework’when the subject of Advance Care sites carried out a training needs analysis, register). This enables them to be placedPlanning was broached. Staff at the reviewed existing provision and on the correct pathway to accessfacility considered that for some patients benchmarked it against national treatment and support.timing of the discussions is very important competences. They then used a needsand as such an inpatient facility after an based approach to develop new training Two of the projects looked at increasingacute episode may not be right for them. plans. For more information visit the numbers of COPD patients on theSome staff and experts in end of life care www.endoflifecareforadults.nhs.uk/public end of life registers (which nationallybelieve that the right time is when the ations/talking-about-eolc averages at about 14%). Solihullpatient is feeling relaxed and well, Community NHS Care Trust spent aperhaps at an earlier stage in the Once the improvement projects had the considerable amount of time and effortdiagnosis. This can often be less baseline they were then able to initiate undertaking some ‘leg work’ amongstdistressing and potentially more positive any training e.g. advanced their GP surgeries to generally raisewith regard to planning. communication skills, and clinical awareness of COPD as a life threatening supervision which was needed. Within condition and also undertook training forRaising staff awareness the projects some staff had already primary care staff in using prognosticRaising the awareness of COPD as a received training through Association of indicators and undertaking Advance Careterminal illness amongst clinical staff is Respiratory Nurse Specialists (ARNS), Planning when COPD patients wereone of the key imperatives in improving some staff had in-house training moved onto the end of life registers.end of life care for sufferers of this arranged for them which was deliveredcondition. through small groups by a visiting Hartlepool Primary Care NHS Trust palliative care specialist, and others were worked with two practices to review theirRespiratory staff understand that COPD is the need has been identified are now current COPD registered patients usinga very serious illness and will be familiar waiting to attend future courses. the BOD prognostic indicator tool. Somewith patients who have suffered severe of learning identified the need to engageexacerbations and have been very ill. The National End of Life Care Programme primary care in this process to determineHowever, the overriding evidence from all launched a new e-learning package in if the correct codes on the patient recordsproject sites was felt that some staff were January 2010: e-End of Life Care for All. system are being used to record ahesitant to acknowledge when proactive It is freely available to all healthcare staff, diagnosis of COPD – as this willtreatment in a COPD patient may not be with some public-facing modules for significantly affect how the patient isappropriate anymore and were thus volunteers/carers, and currently contains managed and ensures that the patient isreluctant to engage in the projects. They several sections on communication on the correct clinical pathway inwere also unsure of their competence to skills (for more information visit accordance with their condition.treat COPD patients when end of life www.e-lfh.org.uk/projects/e-elca)became a possibility. The desire to returnpatients to full health and the messageswhich patients received from clinical staffaround prognosis and recovery was oftenbased on this premise.
Breathing Space, Rotherham 9One - Breathing Space, RotherhamPrognostic indicators and advance care planning in chronicobstructive pulmonary disease (COPD)The background to the serviceBreathing Space is a unique nurse ledfacility in the heart of Yorkshire whichwas built in 2007 as a result of apartnership between the CoalfieldsRegeneration Trust, Rotherham PrimaryCare Trust and Rotherham MetropolitanBorough Council.It is the largest multidisciplinarycommunity based chronic obstructivepulmonary disease (COPD) rehabilitationprogramme in Europe. Originally the soleaim was to care for patients with COPDand this has now been extended to otherchronic respiratory conditions. Its facilitiesinclude clinics for assessment andaccurate diagnosis, pulmonaryrehabilitation (for more than 400 patientsa year) and a 20 bed inpatient unitdedicated to providing care for acuteexacerbations.At the time of joining NHS Improvement - The project aims and objectives • Do patients who have had AdvanceLung, the Nurse Consultant and Project The main aim of the project was to Care Planning achieve their preferredLead, Gail South, had identified that advance the service delivery model for place of care and other goals?many of the COPD patients at Breathing end of life care at Breathing Space as a • Do senior staff feel competent andSpace had at least one of the Gold choice for COPD patients and to support confident at having these dscussionsStandards Framework prognostic the carers of these patients during this after appropriate training?indicators often used to determine the difficult time.last 12 to six months of life. This provided What they didthe catalyst for the service to look at the The project hoped to answer some of the A baseline audit was undertaken toprovision of end of life care and how this following questions: determine whether there was anypart of the pathway for patients at the evidence to suggest prognostic indicatorsfacility could be improved. • Are Gold Standards Framework would be found amongst previous prognostic indicators for COPD patients who were admitted to Breathing predicting death within 12 months? Space. This revealed 60% already had at • Are COPD patients with at least one least one prognostic indicator. Gold Standards Framework prognostic indicator (and their carers) interested in participating in Advance Care Planning? • Do staff feel that patients with at least one Gold Standards Framework prognostic indicator are appropriate for Advance Care Planning?Gail South (left) – Project Lead
10 Breathing Space, RotherhamA paper audit form was then designed by Issues and challenges Key learningsenior staff to be used to capture any Department of Health policy aimed at The majority of patients who died duringprognostic indicators present in patients transforming community services meant the period of the project had more thanattending assessment as an outpatient to that Breathing Space integrated with three Gold Standards Frameworkthe pulmonary rehabilitation programme Rotherham Foundation NHS Trust in indicators present on their last admission,and at time of admission during an acute March 2011. This represented a challenge although overall staff felt the surpriseexacerbation. The final page of the audit in terms of the continuity for the project question was perhaps a better predictorform asked the staff member responsible as the then current provision of services of death within a six to 12 month period.for admission to decide whether to was reviewed by the new host The ‘surprise’ question asks the clinicianinitiate an Advance Care Planning organisation. In order to mitigate this the to consider whether they would bediscussion with the patient. This included senior team at Breathing Space involved surprised if the patient were still alive ingiving information to the patient, notably in the integration ensured that staff at 12 months time.the British Lung Foundation ‘Guide to Rotherham Foundation NHS Trust wereCoping with the Final Stages of Lung fully aware of the aims and objectives of Advance Care Planning materials used inDisease’ and an adapted version of The the study and its progress by that date. this project received mixed responsesWhittington Hopsital NHS Trust patient from both staff and patients. The Britishleaflet on ‘Do Not Attempt Resuscitation’. Locally the project lead spent a significant Lung Foundation booklet contained too amount of time working on engagement much information for some patients andPatients and their carers were also given and ownership of the project by the was difficult for staff to use. Breathinginformation about their ‘Preferred whole team. Continuing to have regular Space have decided to create their ownPriorities for Care’ (PPC) and asked if they monthly meetings and emailing feedback patient folder which can be personalisedwanted to complete any of the to all team members has helped with bite size information on differentdocuments either on their own or with overcome communication barriers with elements of care which can be providedassistance from staff. staff who rarely spend time together due to the patient over a staggered period of to changing shift patterns. Staff were also time.Breathing Space used a PDSA (plan, do continually encouraged to comment onstudy, act) approach during August 2011 the project and data collection successes Not surprisingly many clinical staff feltto trial the form and they found quite and difficulties. very uncomfortable with end of life carequickly that one prognostic indicator was discussions. Even when patients hadnot necessarily an appropriate prompt for Respiratory services also face their busiest three prognostic indicators present oninitiating this kind of discussion and time over the winter months and high admission, there were a sizeable numbertherefore staff were documenting ‘not admission rates and bed pressures have of audit forms where staff had indicatedappropriate’. The form was changed to impacted on the progress of the project an Advance Care Planning discussion diduse three indicators as the trigger point, where the time could be dedicated to not take place. This could have been forand if senior staff felt it was not some of the data collection and many reasons, some included: previousappropriate to initiate this discussion at administrative functions. bad experiences, lack of confidence in thethis point, they were asked to document skill to address this subject, a pre-their reasons as to why. Talks with staff indicated that many of perception that it was not necessary and them felt a certain level of unease when a fear of worsening the patients mentalA spreadsheet recorded all the data asked to engage in an end of life care state by introducing the topic of dying.inputted from the paper audit forms discussion with patients. In order to Although these issues are still apparentcollected. In conjunction with this project ensure staff felt empowered and skilled they are being addressed throughten staff on the inpatient unit attended a to undertake this sensitive and supervision and training.preliminary training session on advanced challenging task, ongoing training incommunication skills delivered by a communication skills and thepalliative care specialist. This followed a development of clinical supervisionbaseline audit of training skills amongst strategies have given support to staffall staff. which has enabled reflective practice.
Breathing Space, Rotherham 11Perhaps less surprisingly, many COPDpatients felt uncomfortable with the idea Breathing Space - Number of GSF GSF use in deaths in January -of end of life planning and some patients indicators on death March 2011were distressed when the offer of 60Advance Care Planning was made Outpatientsavailable. Staff reflected on these Inpatients Number of Patientsincidents and concluded that in somecases an acute inpatient admission may 40not be the most appropriate time toinitiate this kind of discussion. They arenow considering the introduction of some 20general end of life care informationduring the weekly pulmonaryrehabilitation sessions open to in and 1 GSF 2 - 3 GSFoutpatients of the service. 0 NR 1 2 to 3 3 or more Over 3 GSF GSF not Number of indicators recordedDataBetween 1 September 2010 and 31 July2011, a total of 683 patients with COPDwere either admitted to the inpatient unit However, there was a substantial GSF use in deaths in April - June 2011(606) or attended an assessment for improvement in the recording of thepulmonary rehabilitation (77). number of GSF indicators in patients who died as the project term went on.Overall 186 (27%) patients had at morethan three prognostic indicators at timeof admissions. GSF use in deaths in October - December 201083 patients died since 1 September 2010(76 inpatients and seven outpatients).Where recorded 18 out of 76 inpatientswho died had more than three prognosticindicators, nine had two to three 1 GSF 2 - 3 GSFindicators and six had one indicator. Of Over 3 GSF GSF notthe seven outpatients who died, three recordedhad two to three prognostic indicatorsand two had one indictor where it hadbeen recorded. 1 GSF 2 - 3 GSF Over 3 GSF GSF not recorded
12 Breathing Space, Rotherham Breathing Space - Comparison of pognostic indicators and end of life practice 18 16 14 Number of Patients 12 10 8 6 4 2 0 8 9 10 11 12 1 2 3 4 5 6 7 2010 2011 Month GSF >3 and surprise =N ACP appropriate BLF completed PPC completedFull year data from August 2010 to July2011 is shown below with regard to thenumber of patients with three or moreGSF indicators deemed appropriate forAdvance Care Planning and those whowent on to have the British LungFoundation booklet given and a PreferredPlace of Care recorded.Project lead contact detailsGail SouthRespiratory Nurse ConsultantBreathing Space, Badsley Moor LaneRotherham S65 2QLTel: 01709 421700Fax: 01709 421701Email: email@example.com
Solihull NHS Care Trust 13Two - Solihull NHS Care TrustImproving identification of end of life care needs and Advance CarePlanning to support preferred place of care for patients with COPDThe background to the serviceSolihull Community NHS Care Trust hadalready adopted the Gold StandardsFramework in end of life care across all ofits 31 GP practices. Patients identified forthe Gold Standards Framework palliativeregister access community servicesthrough a supportive care pathway whichsupports holistic assessment, AdvanceCare Planning and proactive careplanning.To date the pathway has improved theprovision of proactive coordinated carefor patients with end of life care needs in Sandy Walmsley – Project Lead Helen Meehan – Project Leadthe community. However, it wasrecognised that the number of patientswith chronic obstructive pulmonary The main objectives for the project A letter of introduction was sent to thedisease (COPD) accessing the pathway were to: practices to be involved. The project teamwas limited. also attended primary care meetings, • Increase number of patients with COPD such as a GP learning event in order toIt was felt the time was right to support on Gold Standards Framework register raise the profile of their work and spentclinicians working in primary care and in from 8% (baseline) to 14% (the time in practices with community teamscommunity services with improving national average) sharing information on the Goldidentification of patients with end stage • Increase the number of patients Standards Framework prognosticCOPD for the Gold Standards Framework supported in the community on the indicators. They were also supported bypalliative registers. supportive care pathway some concurrent care of the dying and • Monitor the number of patients: with communications skills training for staff inThe project aims and objectives COPD on the GP practice Gold the region which had been fundedThe project team worked with 12 out of Standards Framework register, who are through the Strategic Health Authoritythe 31 GP practices in the geographical offered Advance Care Planning (SHA) and delivered by Education forarea. The main aim was to improve discussions and who have Preferred Health.identification of patients with end stage Priorities of Care recordedCOPD in primary care, to enable proactive • Monitor achievement of preferred place The information provided within thecoordinated care and support preferred of death and place of death for training sessions was formalised into localplace of care at the end of life. patients with COPD. prognostic indicator guidance which along with the ‘My LIFE’ booklet wasPatients were supported by practices and What they did shared amongst GPs, community matronscommunity teams using the Gold Baseline data was collected to establish and community respiratory teams.Standards Framework, the local an overview of the current position withsupportive care pathway and Advance end of life care amongst the 12 GP Guidance on read codes was pulledCare Planning materials devised by local practices part of the improvement together as part of the preliminary workservices (MY COPD and MY LIFE project. This revealed that approximately needed before the use of ‘Graphnet’booklets). 9% of the total number of patients which is an electronic audit tool which currently on the Gold Standards can be used to search GP registers for Framework registers had an unconfirmed patients with certain diagnoses, as well as or confirmed diagnosis of COPD. auditing patient outcomes relating to specific read codes.
14 Solihull NHS Care TrustHowever, because of delays in being able Advance Care Planning is vital to Data on place of death showed that forto implement the Graphnet tool the supporting patients at end of life. The the entire Primary Care Trust area (31project team reverted to using the team benefited from already having the practices in total) the number of patientscommunity care electronic records system locally designed and readily available ‘My dying of COPD at home rose from 20%(ePEX) to manually extract information on LIFE’ booklet which incorporates all the in 09/10 to 23% in 10/11.patients they had identified through relevant information and is just forpractice registers who were eligible but patients with COPD. The patient satisfaction survey revealednot currently on the Gold Standards that of those questioned 90% were veryFramework register. The project team were also been satisfied with the overall experience of supported by two GP champions and care they had received to date.A successful bid was entered to the increased much needed awareness ofStrategic Health Authority which resulted COPD end of life issues by providing Project lead contact detailsin funding for two GP champions for training to GPs and community teams. Helen MeehanCOPD and end of life who were able to This was further reinforced with Lead Nurse Palliative Carework for half a day per week with local information on the palliative intranet site, Solihull NHS Care Trustpractices. which can be accessed by all GPs and Tel: 0121 712 8471 community services. Email: firstname.lastname@example.orgThe team also developed a carer surveywhich was completed on bereavement. The integration of the community services Sandy Walmsley and the acute Trust had some unforeseen Lead Respiratory Nurse SpecialistIssues and challenges benefits for the project, mainly improved Solihull NHS Care TrustThe main issue that delayed progress was communication between the respiratory Tel: 0121 329 0179the implementation of the Graphnet tool. community team and the end of life Email: email@example.comThere was recognition early on in the provision on the wards. Overallproject that baseline data from Graphnet relationships have been improved with allcould not be captured retrospectively and stakeholders and especially hospices,that some GP practices were using which now have greater awareness ofvariable read codes which would have terminally ill patients with respiratorymade data extraction very difficult. The disease.only solution for the team was to revertto manually collecting patient information Datathrough their own community electronic For the 12 GP surgeries the baseline datarecord (ePEX) rather than interrogate at the start of the project demonstratedindividual practice registers in primary that 214 patients were currently on thecare. The team then faced further end of life practice registers, of which 20disappointment in that due to patients had a (confirmed andorganisational changes due to the unconfirmed) diagnosis of COPD. Thistransforming community services national represented 9% of patients.work the IT department was subsequentlydisbanded and the Graphnet tool could Midterm data showed the number ofnot be implemented. COPD patients on the register had increased to 28 – with 247 patients onKey learning the register overall. This represented anAnecdotal evidence from practice staff increase of COPD patients to a proportionsuggested that the Gold Standards of 11%.Framework indicators were not aseffective as the surprise question ( which End of project data was only availableasks the clinician to consider whether from 11 practices and showed there werethey would be surprised if the patient 266 patients on the end of life registerwere still alive in 12 months time) as a with 19 having a primary diagnosis ofpredictor of death at six to 12 months. COPD (7%).The project team are undertaking anaudit amongst GPs to determine morerobust evidence for this.
North Tees and Hartlepool Primary Care NHS Trust 15Three - North Tees and HartlepoolPrimary Care NHS TrustThe implementation of BOD in primary careThe background to the serviceThe respiratory nursing care communityteam have a well established servicewhich operates out of the heart ofHartlepool in new facilities – ‘One Life’.The current team have a well establishedlink to the palliative care community teamand as part of their commitment todevelop effective and quality carepathways for patients they wanted toaddress the particular challenges of theend of life pathway in chronic obstructivepulmonary disease (COPD).A multidisciplinary end of life groupadapted an existing set of indicatorsincluding: body mass index, FEV1obstruction and MRC dyspnoea score(originally including exercise and knownas BODE – Celli et al, 2004) whichbecame known as BOD.The project team led by a British Lung Left to right: Dr Niall Kearney and Dorothy WoodFoundation nurse and supported by arespiratory and a palliative care consultanttrialled BOD within two GP practices in A process of staff awareness raising and improve shared decision making,the Hartlepool locality. training on BOD as a prognostic indicator autonomy and access to resources for tool and end of life care discussions took COPD patients. It is hoped that all of theThe project aims and objectives place alongside the case finding in order GP practices in Hartlepool will beTo improve recognition of the to embed the new practice with staff and approached and agree to record the BODdeteriorating COPD patient and their end ensure sustainability. Index.stage / end of life potential by utilisingthe BOD tool as a prognostic indicator To date five practices are routinely Staff shortages in community respiratoryand trigger tool to facilitate end of life recording BOD scores during routine services made the project challenging,discussion and referral to resources. COPD patient reviews. Scores are however, it is envisaged that once GP recorded on a template and an increase practices understand the philosophy theyWhat they did in score at future consultations will will be able implement the projectTwo GP surgeries were approached and indicate a deteriorating patient. without intensive project teambaseline data collected on the number of involvement in the future. Input wouldpatients on the COPD registers. Issues and challenges then be more of a supportive role. Despite a positive start with the two GPThe BOD index was then used by the practices more practice recruitment is Originally there was difficulty in obtainingproject manager (Dorothy Wood) in required to demonstrate an evidence a template for recording BOD scores asconjunction with the practice teams to based benefit from a qualitative well as obtaining a read code fromidentify patients on the COPD register perspective and because of this a gradual information technology. Both werewho were eligible for discussion around approach to recruiting GP practices has eventually made available in April 2011.their condition and given the opportunity been adopted. The implementation is Practices that do not have this system willfor Advance Care Planning. considered part of an on-going plan to be able to develop their own template.
16 North Tees and Hartlepool Primary Care NHS TrustThe Trust covers two main urban areas: nurses to enable them to improve their Project lead contact detailsHartlepool and Stockton. There was a communication skills and confidence in Dorothy Woodlesser degree of engagement from the managing planning ahead discussions BLF Lead Respiratory NurseStockton area and although three effectively. ONE LIFE HARTLEPOOLsurgeries voiced an interest in Park Road, Hartlepool TS24 7PWimplementing BOD due to pressure of Datawork the support required to carry this The number of patients on the COPD Tel: 07917 172464interest through has not been available. register for both practices remained Office: 01429 285712 relatively static throughout the project Email: firstname.lastname@example.orgKey learning period. Overall, by the end of the projectLearning on the use of BOD suggests it is 189 patients had been reviewed usinga good predictor of the intermediary the BOD scoring system whichstage between the start of decline in the represented about 85% of the totalpatient condition rather than of death at number of patients on the register atsix to 12 months. June 2011 (223).BOD was used as a trigger to facilitatediscussion about how the patient was Month No of patients on No of patients Cumulativemanaging their condition and what the COPD register reviewed Totalpatients concerns were. It also allowedthe professional to gather all of those July 2010 229 14 14 August 2010 229 15 29concerns together and engage in shared September 2010 229 19 48decision making with the patient about October 2010 228 22 70their future. November 2010 225 16 79 December 10 225 15 93Practice nurses recognised that those January 2011 225 19 102 February 2011 223 14 116patients with the highest BOD scores March 2011 223 20 136were predominantly those with the April 2011 222 23 159highest morbidity and this ensured the May 2011 223 18 177patient had the opportunity to plan for June 2011 223 13 189their death when they were feeling well(if they wished to) and had more timelyaccess to available resources. Progress in reviewing COPD patients in two GP practices in Hartlepool using BODAs with other projects it was identified 250that not all staff were confident instarting a planning ahead discussion with 200patient. The Foundation Trust has now Number of Patientsinvested in training two members of staff 150to become facilitators in delivering SAGEand THYME™ training. (SAGE and 100THYME™ is a communication model forhealth and social care professionals to 50enable them to communicate effectivelywith concerned or distressed people and 0respond in a way that empowers the Jul 10 Aug 10 Sep10 Oct10 Nov10 Dec10 Jan11 Feb11 Mar11 Apr11 May11 Jun11distressed person). The two-day course Monthwill gradually be delivered to practice Total patients on COPD register Patients reviewed using BOD this month
Acknowledgements 17AcknowledgmentsNHS Improvement - Lung would like tothank all national improvement projectsites for their hard work and dedicationto improve quality and care for peoplewith COPD, and for their contributions tothis document.In addition, the following people haveprovided a source of expertise andsupport and their help is gratefullyacknowledged:Eleanor Sherwen, End of Life CareProgramme Manager, End of Life CareProgrammePhil Duncan, Director,NHS Improvement - LungCatherine Blackaby, NationalImprovement Lead, NHS Improvement -LungOre Okosi, National Improvement Lead,NHS Improvement - LungCatherine Thompson, NationalImprovement Lead, NHS Improvement -LungZoë Lord, National Improvement Lead,NHS Improvement - LungAlex Porter, Senior Analyst,NHS Improvement - LungFor more information please contact:Hannah Wall, National ImprovementLead for End of Life Care and Asthmahannah.email@example.com
18 ReferencesReferencesCOPD and Asthma Outcomes Strategy forEngland and Wales (DH: 2011)Consultation on a Strategy for COPDServices in England and Wales (DH: 2010)End of Life Care Strategy (DH: 2008)End of Life Care Strategy (Department ofHealth: 2008)The Gold Standards Frameworkwww.goldstandardsframework.nhs.ukThe BODE IndexCelli BR et al (2004): New EnglandJournal of Medicine 350 p1005-1012The National End of Life Care Programmewww.endoflifecareforadults.nhs.ukNational Palliative Care Councilwww.ncpc.org.ukThe Whittington Hospital NHSFoundation Trustwww.whittington.nhs.ukSt Christopher’s Hospicewww.stchristophers.org.ukBritish Lung Foundationwww.lunguk.org